One in four terminally ill people in the UK are missing out on the end of life care they need, according to research by national hospice and palliative care charity Hospice UK, which is running its Open Up Hospice Care campaign this March, aimed at widening access to this vital support for people living with life-limiting conditions and those who care for them.
The campaign highlights that hospice care is for everyone, including those who want to be looked after in the place they call home.
Tracey Bleakley, Chief Executive of Hospice UK, said: “With its focus on comfort not cure and promoting quality of life and what matters most to people, hospice care can help them live well until the end of life and support their loved ones, and it is available in more places than most people realise.
“We want to share the benefits of hospice care more widely so that everyone is able to get this vital support and wherever they want.”
While local charity St Luke’s Hospice Plymouth is joining 70 counterparts up and down the country in backing the national campaign, it is specifically shining a light on the terminally ill among the homeless population and also people living in isolated places across the areas it serves, two groups currently among those most at risk of being overlooked when it comes to getting expert care in their last days.
In keeping with its ethos looking after people ‘no matter where’, St Luke’s is spearheading open conversations about the challenges of ensuring its vital service reaches all who need it, so that nobody has to die alone, in pain or in distress.
George Lillie, Clinical Director and Deputy Chief Executive at the charity, said: “St Luke’s is a hospice without walls, and many of those for whom we provide care want to receive it in the place they think of as home, whether this is in a ‘traditional’ setting, or whether they live in a remote area, a care home, a hostel for the homeless, or even in prison. Terminal illness does not discriminate and neither does hospice care, so it’s important that we work closely with the communities we serve to address the challenges so that no-one is left behind.”
Often having poor health and shorter life expectancy, and with no fixed abode, homeless people can be particularly vulnerable yet may not be known to a GP or other health professionals.
When ‘home’ is a hostel bed or a sleeping bag in a doorway, and when there’s no family or friends around to provide support, what happens when your time is running short? Who is there to show compassion and give care then?
Acknowledging the challenges of reaching and supporting people who are often living transient lives, St Luke’s is pioneering work with other local health and social care providers that can help ensure the homeless are not forgotten at such times.
St Luke’s Specialist Nurse Gilly Barringer said: “It’s important to us that no-one who needs our care is ever turned away, so we’ve been reaching out to terminally ill people among the homeless in our city by working closely with charity Shekinah and the George House Hostel. My role has involved getting to know the professionals in these organisations to gain a better understanding of the challenges faced by them and the people they support.”
At George House Hostel, which provides 48 of the city’s 250 beds for homeless people, Gilly has been working with staff so that with their facilitation she can come alongside any residents identified as in need of St Luke’s compassionate care.
She said: “With people who are homeless, it can be quite challenging having these sensitive conversations because often they move from place to place. However, working with the hostel staff enables me to build a relationship with the terminally ill person, even if I sometimes have to seize the moment and be quite opportunistic in my approach.
“As I get to know them, we discuss their needs and wishes relating to their care and where they want to be looked after, which for some is within the hostel because that is what they regard as home. It’s so important to have these conversations particularly because sometimes, due to drug or alcohol abuse, their care needs can be more complex and their deterioration more rapid.
“Working with the person, their GP and hostel staff means together we can put a tailored plan in place to help ensure they’re where they want to be, receiving the high-quality care they need, at end of life.”
Sean Mitchell, Manager at George House Hostel, said: “With the need for our services increasing but resources shrinking, initially I had reservations about us getting involved with end of life planning for the people we help. However, working with St Luke’s we have mutual respect for each other’s skills and collaborate in the best interests of any terminally ill residents who need this specialist care at George House.
“With the training and support St Luke’s provides, we are much better equipped to help them realise their wish of ending their days in a more positive way here, with people they know around them, rather than dying alone in hospital or on the streets.”
You can read more about St Luke’s work in opening up hospice care to everyone who needs it – and how you can help – online here.